Sunday, December 24, 2006

Peter Szatmari is the best known and most influential of Canada's autism researchers. His published papers are always worth reading, regardless of whether you agree or disagree with his general direction. I'm bending the rules of Verbatim slightly and quoting from Dr Szatmari's 2004 book, which is a popular rather than scholarly book. It is, however, his only published book to date, and while Dr Szatmari is not a cognitive scientist, here he is musing about autistic cognitive processes. These are two excerpts from the same chapter. They are deliberately chosen to circumvent, as much as is possible in this book, Dr Szatmari's preponderant and constant reminders that, in his view, the autistic abilities he exclaims about are only the pathological side-effects of our overwhelming and devastating impairments. Justin is a 30 year old autistic adult, one of the first autistics Dr Szatmari ever met.

Justin is especially fascinated with thunderstorms. Every time there is a thunderstorm he takes his tape machine outside and records the sounds. Afterward he plays the tapes to amuse himself and to help him fall asleep. He also likes to buy commercially produced weather tapes and will add them to his collection of homemade tapes. Once, after he bought a couple of tapes, he quickly noticed the same thunderstorm was on both of them. He was not a little put out at the discovery. "How dare they try to pull a fast one on me?" he said indignantly.

I once asked him why he recorded thunderstorms. "They all sound the same, don't they?"

Justin looked at me as if I were the stupidest person on earth. "No," he said. "They all sound quite different." But he did not elaborate.

I asked him to bring some tapes to our next appointment, and we spent the hour listening to them. He was right; all storms do sound different. He pointed out the variation in the peals of thunder. There were differences in volume, of course, but I had never heard the wide range of pitch and rhythm. How amazing!

[...]

It is the ability to see, hear, and play with the intimate architecture of the world that is truly amazing. The rest of us can see this architecture too if we make a conscious decision to look. But we are rarely drawn to it as a natural affinity. We have to work at it. We have to turn away from language and from social relationships to see it. People with autism gravitate to it effortlessly.

Reference:

Szatmari, P. (2004). A mind apart: Understanding children with autism and Asperger syndrome. New York: Guilford.

The gist of Mr Vardy's testimony is that having an autistic son is horrible, and has destroyed his and his family's life. And of course he testified that it would be better if autism were fatal.

According to his testimony, Mr Vardy didn't notice much different about his autistic son at all, until he was 15. Then, he testifies (this would have happened in 1987, seven years after autism first appeared in the DSM, and the year the DSMIII-R came out),

We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder. That was because our medical system did not have the capacity to diagnose autism at the time. It is not much better today.

Mr Vardy goes on to recount multiple wrong diagnoses, and adds,

Medical practitioners regarded Adam as a puzzle. Psychiatrists did not consider autism to be a possible diagnosis.

Then Mr Vardy diagnoses his own son:

Up to this point in time, we had not received a concrete diagnosis for Adam. After his hospitalization, it was suggested by an adolescent counsellor that a mild variety of autism could be the problem. We investigated the literature in this area. We read the medical journals, and we came to the conclusion that autism was the problem. The psychiatrist at the time did not concur with this.

And:

Other professionals, such as a speech language pathologist, did [concur that Adam was autistic]. We reached a point where Adam became so reluctant to see doctors that we never did get a formal diagnosis.

So Mr Vardy's son Adam is an undiagnosed autistic. Neither an adolescent counsellor nor an SLP is qualified to diagnose autism.

Yet Mr Vardy was 1st Vice President of ASC, and was considered an autism expert by the Canadian Senate. Not only did he not prove his son was autistic, he could not do this.

Oddly, there was no outcry from the powerful and influential leaders of the Canadian "autism community".

You can imagine what would happen if this story was told from Adam Vardy's point of view, not David Vardy's. Adam becomes "self-diagnosed", there is certainty that he is an imposter and fraud (and surely a malingerer) because his parents did not notice anything when he was young, professionals never considered or actually denied that he was autistic, etc.

In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.

That "thematic study on autism" has now taken place in a series of hearings, with a report due in May, 2007. I tried to ask for two things in these hearings, and indeed, some themes emerged.

Previous hearings were used by autism advocates as a platform from which to denigrate and dehumanize autistics (see this and this). I asked the Senators to apply at least minimal standards to their autism hearings, so that autistics would not again be dehumanized and therefore harmed.

This was totally rejected. I was told that all views of autistic people were welcome, no matter how dehumanizing. There was no indication that this Committee saw dehumanization as being harmful to autistics. Perhaps they had already decided that if autistics are dehumanized, this is because we are in fact less than human. In any case, even a superficial glance through the transcripts in the Senate autism hearings shows that living, healthy, present autistics have been described, without protest, as bleeding to death, kidnapped, and dead. Autistics have been repeatedly portrayed as just naturally being violent because we're autistic, as appalling burdens, etc.

Unsurprisingly, in the final hearing on December 8 (a hearing supposedly dedicated to autism research), one Senator asked a non-autistic witness about the problem (which made this Senator "sadder than I already have been") that autistics ("those who suffer from this disability") don't feel anything. We don't experience happiness or pain. This was a Senator asking a non-autistic about an assumption the Senator had made--that autistics aren't sentient, or human.

The second thing I asked was for the Senators to live up to what they wrote in 2005, and to include autistics in these hearings as "full and equal partners". Instead, the Senators banned autistics from the most important hearing of the series, the big round table meeting about autism research.

I spent some time trying to persuade the Senators that they should reconsider. This also was totally rejected.

Their decision to ban autistics from discussions and decisions about autism research, like their decision that the dehumanization of autistics is welcome, is a major consequence of these hearings. Autistics have been banned before. Efforts were made to change this. Now the Senate has weighed in and showed all Canadians that autistics really should be banned. And if we're dehumanized too, that's also just fine. That's how autistics should be treated in Canada.

Canada's Senators have told autistics to stay away from autism research, to forget about even considering that we have anything to say about our future (a future which is overwhelmingly determined by autism research), and to leave the major decisions about us in the hands of non-autistics. They've told autistics we should never, ever question this.

And the Senators refuse to explain why autistics were banned. Senator Art Eggleton's office promised to send a letter with an explanation. This promise was no less empty than the Senators' promise to recognize autistics as "full and equal partners".

According to Senator Eggleton, speaking at the autistic-free round table about autism research, the Senators asked Rémi Quirion from the Canadian Institutes of Health Research to decide who should attend this meeting. The CIHR, and Dr Quirion himself, have previously united with Autism Society Canada, Autism Speaks (NAAR, at the time), the Canadian Autism Intervention Research Network and others, to ban autistics from all discussions and decisions about autism research in Canada.

Dr Quirion and the CIHR, and ASC, Autism Speaks and CAIRN, have never apologized for this, or indicated that they may have made an error, or explained why they decided to ban autistics. Instead, they continue to maintain that while autistics deserve to be banned, we don't deserve an explanation. Canada's Senators have just repeated the same process and made the same decisions, with all their considerable authority: autistics should be banned, and we aren't worth the bother of an explanation.

Meanwhile, non-autistic parents are as always invited, always considered expert, always welcome, and always taken very seriously. It would be unthinkable to ban non-autistic parents. This would make headlines. There would be demonstrations. There would be outraged editorials. Same thing if non-autistic parents were dehumanized, or portrayed as just naturally being violent, as autistics have been in these hearings. Heads would roll. You would never hear the end of it. Etc.

At the December 8 meeting, Senator Eggleton, the Committee Chairperson, indicated sternly that the Senators had invited quite enough autistics already. Clearly, having us at the round table with the 16 invited non-autistics (parents, parent-run organizations, family members, and researchers) would have been downright excessive, and surely outlandish, by the standards of our Senators.

Of the 48 witnesses who appeared in the Senate autism hearings, 5 were autistics (most hand-picked by organizations overwhelmingly run by and for non-autistics), and 43 were non-autistics.

Of the 12 sessions, non-autistics appeared in 10, and autistics appeared in 2. Non-autistic parents and/or parent-run groups (16 witnesses) appeared in 7 sessions. None of the many groups which appeared had any meaningful participation by autistics, and most had none at all. Groups that actively ban autistics, including by denying that autistics who communicate are autistic, were welcomed with open arms (e.g., Autism Speaks, the CIHR, CAIRN, FEAT), as was ASC, which has recently banned autistics, and having been required to appear to include autistics, has built a supervised autistic ghetto.

Of the 48 witnesses, ASC had at least 8 witnesses, CAIRN had at least 6 witnesses, FEAT had at least 4, and Autism Speaks had at least 2. The CIHR appreared, as did the Office for Disability Issues and Health Canada--all government organizations that have banned autistics, and of course, the CIHR was welcomed by the Senate to help the Senate ban us again.

I'm afraid I (outlandishly) suggested that groups that ban autistics--or, like ASC, confine autistics to a small, supervised hand-picked powerless ghetto--should no more be given a platform by the Senate than would groups that ban Jews or black people or people in wheelchairs (or confine these groups to a small, supervised hand-picked powerless ghetto) while claiming to represent them, but of course this was rejected before I was even done saying it. Banning autistics is fine with this Senate Committee. They did it themselves.

As happened in the previous set of hearings, I was not permitted to testify under my affiliation, and was required to appear as an individual. That is, the Senate refused to recognize that an autistic is a research associate affiliated with a research group, even though all correspondence was signed with my affiliation, and I requested to appear under my affiliation (and was also recommended as a witness by the research group I'm affiliated with). Since all the non-autistics who testified were permitted to use their affiliations (even when identifying themselves as parents or family members), I have to conclude that the persistent refusal of the Senators to recognized my affiliation is related to my diagnosis, and to the prejudices these Senators are promoting in their "thematic study on autism", including that autistics should not in any way be considered as equals, and that we have nothing to contribute to autism research.

Tuesday, December 12, 2006

A while back, Autism Diva wrote about some testimony I gave as a witness in Canada's Senate. This was for the Standing Committee on Social Affairs, Science and Technology hearings about autism treatment funding (and about a national autism strategy).

I haven't looked through it carefully, but at least some of the errors in the first effort at transcribing have been corrected. I can spot one place where my correction wasn't accepted, and the "correction" is worse than the original. I was trying to say "Boyd and Corley", and now they are insisting that I said "Boyd and Connelly", which gives a fair indication of how poor my enunciation can be when I'm not reading word for word from a script. And when I'm stressed right out. I've just spotted another place where something that was correct first time around was changed so it is now incorrect, based no doubt on my lousy articulation. I'm definitely a stenographer's nightmare.

Last time I appeared before this Committee, I read my brief word for word. In this case, I had insufficient warning, and apart from the words I had from other people, who were generous in allowing me to present their writing, I was not prepared at all.

I remember vaguely that after I spoke and I was sitting there shaking, an enthusiastic person rushed up to me and said things and I had to ask, "Who are you?", and it turned out to be one of the Senators. That was right before I was whisked out of the room and backwards through security and out to a taxi stand because I was about to be late for my train (the last one to leave town).

Thursday, December 07, 2006

This Verbatim is in two parts, from the same paper (Koegel et al., 1974).

Here is the first part, which is Table 1 from this paper. "Subject 1" is an 8-year-old autistic boy. "Subject 2" is a 6-year-old autistic girl. Table 1 lists the behaviours the experimenters identified as self-stimulatory and requiring suppression for each child.

Subject 21. staring or gazing (a fixed glassy-eyed look lasting more than 3 sec)2. grimacing (corners of mouth drawn out and down, revealing the upper set of teeth)3. hand waving vertically or horizontally with fingers outstretched in front of eyes4. hands vigorously and repetitively rubbing eyes5. hands vigorously and repetitively rubbing nose6. hands vigorously and repetitively rubbing mouth7. hands vigorously and repetitively rubbing ears8. hands vigorously and repetitively rubbing hair9. hands vigorously and repetitively rubbing clothes10. hands vigorously and repetitively rubbing objects11. hand flapping in air12. hand wringing (hands alternately rubbing and clutching each other)13. finger contortions (tight sustained flexions)14. tapping fingers against part of body or an object15. tapping whole hand against part of body or object16. mouthing of objects (holding nonedible objects in contact with the mouth)17. rocking (moving the trunk at the hips rhythmically back and forth or from side to side)18. head weaving (moving head from side to side in a figure-eight pattern)19. body contortions (sustained flexions or extensions of the torso)20. repetitive vocalizations (excluding recognizable words)21. teeth clicking (audibly and rapidly closing teeth together)22. tongue rolling and clicking23. audible saliva swishing in mouth24. repetitive tapping feet on floor25. repetitive tapping toes inside shoes (visible through canvas tennis shoes)26. leg contortions (tight sustained flexions)27. repetitive knocking knees against each other28. repetitive knocking ankles against each other29. tensing legs and suspending feet off the ground30. head shaking (rapid small movements from side to side)31. tensing whole body and shaking

Here is the second part, which is from the text of this paper, and describes what the experimenters did about the behaviours listed in Table 1:

In baseline sessions, the child was allowed to engage in self-stimulation; in the suppression sessions, self-stimulatory responses were punished by one or both of the experimenters sharply saying "No!" and briskly slapping or briefly holding (immobilizing) the part of the child's body with which the response was being performed. To ensure that all self-stimulatory responses were punished on a continuous schedule, one experimenter suppressed self-stimulation from the waist up and the other from the waist down.

This is what I wrote about the consequences of Mr Scott's motion on the TMoB board, many hours before it passed:

[A]utistics in Canada will be more and more seen and treated as though we are sick, defective, diseased and unwanted burdens who have nothing to contribute to Canada except the possibility that we may one day (after undergoing unlimited medical and other interventions) imitate the people who say we have so little worth that we shouldn't even exist.

Starting tomorrow, we'll be more and more likely to be required to undergo unlimited treatment to get rid of our essential traits and abilities. We'll be less and less likely to receive assistance and accommodation to allow these traits and abilities to flourish. We'll be less and less likely to have basic human rights to protect our essential differences.

Interestingly, both the autism advocate Harold Doherty and Liberal MP and autism advocate Shawn Murphy consider that this motion is about autistic children only, though the exclusiveness of the motion to children who Mr Murphy considers to be "suffering from Autism Spectrum Disorder" is not specified in the motion itself. The debates in the House of Commons prior to the passing of Mr Scott's motion also revealed that our political leaders see all autistic people who now exist in Canada as being children. In fact, Peter Stoffer, the NDP MP who seconded Mr Scott's motion, invariably describes autistics as children, which is like referring to all aboriginal people in Canada as children.

However, Mr Scott's motion does not go nearly as far as autism advocates wish, or as far as Mr Scott (who sees all autistics as sick and requiring medical treatment) wishes. Also, this is merely a motion against autism, and our autism advocates demand a law against autism. This time, Mr Murphy is leading the charge, to pathologize all autistic traits and abilities under the law, and to have one approach to autism--that would be ABA/IBI--legislated as "medically necessary" treatment for all autistic people in Canada (keeping in mind that Mr Murphy seems to consider all autistic people to be children).

Research shows that children with Autism Spectrum Disorder, which affects two in every thousand Canadian children, can grow up to function independently in society when they receive Applied Behavioural Analysis (ABA) and Intensive Behavioral Intervention (IBI) from an early age through to adulthood.

In fact, research shows that Mr Murphy's epidemiology is out to lunch, and therefore consistent with the standards of all our famous autism advocates.

But I want to see the peer-reviewed research Mr Murphy refers to, which apparently gives data from a controlled trial about the adult outcomes of children who underwent early ABA/IBI, and shows that these adults "function independently" (whatever that means; independently of what?). In fact, Mr Murphy is reporting research on autistics who start ABA/IBI at the age of early diagnosis and stay in it "through to adulthood", and "function independently" (starting at what age?). I'd like to see those controlled trials as reported in peer-reviewed papers.

I'd write to him and ask for the references, but he hasn't answered even one of a handful of much easier questions I sent him a long time ago. Questions like whether his proposed law would make ABA/IBI "medically necessary" for Rett's individuals, or who should be involved in making decisions about autistic people, or which kind(s) of ABA/IBI he wants the law to make "medically necessary", or whether ABA-based interventions would only be considered medical treatment when applied to autistics but not to those with other neurodevelopmental disabilities, or whether behaviour analysts would now be considered medical professionals, etc. I was told by his staff that these questions were too difficult.

They shouldn't be, not for an expert like Mr Murphy, who took one look at a photo of an autistic person and declared that this person, Alex Bain, looked "normal" (Mr Murphy's instant diagnosis). This made Mr Murphy decide that this autistic's mother--janet norman-bain--was ignorant of autism. In true autism advocate style, Mr Murphy thought it necessary to repeatedly inform Ms norman-bain that autism is a spectrum, something he assumed she was not aware of. At least we now know that Mr Murphy is an expert in condescension. He could give lessons.

In any case, I'd sure like to see all that research showing that ABA-based autism interventions are medical in nature and therefore constitute medical treatment. Where is this research, Mr Murphy and Mr Scott? All I see everywhere in peer-reviewed behaviour analytic journals is ABA-based interventions being described as education, as a learning approach, as instruction, as training. And I don't see ABA-based intervention studies being published in medical journals, with medical journal standards (e.g., disclosing conflicts of interest). I also see famous behaviour analysts denying that medical approaches to autism are valid, and emphasizing the effectiveness--by their standards--of non-medical approaches (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.).

But anyone who's familiar with autism advocacy knows that autism advocates believe that autistics don't deserve even the most basic standards of science, ethics, and advocacy, much less the high standards that benefit and protect themselves. After all, their ideal Canada is not one in which autistics participate as equals, but one in which autism is prevented and therefore autistics do not exist at all. In the meantime, we have a motion against autism, and a law can't be far behind.

Sunday, December 03, 2006

Below are a few pieces (not very organized) of my informal and personal writing about autism and self-injury. I wrote these pieces for various reasons and various people, and they go back a ways. The last piece, which I wrote a long time ago on the TMoB board, was also included as part of my Statement of Particulars in my Canadian Human Rights Tribunal case.

The science in this area is extremely poor (as was testified at the Tribunal). When I wrote the below, Keen (2005) and Keen et al. (2005) had not yet been published. Both these papers support my informal observations in the area of autistic communication, as does the success of interventions designed to train parents to respond to their autistic children's communication (e.g., Aldred et al., 2004). Gernsbacher (2006) is an excellent review of this area. I also strongly recommend this, re the origins of so-called "challenging" behaviours from an autistic viewpoint.

Self-injury doesn't happen out of the blue, though it's often reported this way, and doesn't result from "autism". I've written a bit about self-injury (my self-injury has been an issue in many legal cases). It might help to remember that privacy is an issue (meaning, it bugs me to write about self-injury, even though it's probably important that autistics write about this), and also that a lot of autistics don't have or can't reliably achieve privacy, and this has consequences. Two things essential to a lot of autistics: privacy (being able to hide) and freedom(being able to leave), and we're extremely likely to be deprived of both.

I disagree strongly with the kinds of functional analyses of behaviour I see all the time in ABA programs, where the behaviour analyst makes all kinds of assumptions about the autistic, based on their ignorance of how autistics perceive the world and learn from it, and their total dismissal of our communication. This results in "last straw" behaviours. Your child communicates accurately to you a basic need, over and over, maybe ten or twelve (almost always this number) times. This is ignored, both because his kind of communication is considered "wrong", and because what he needs, which is different from what you need, is also "wrong". Then, having been honest and conscientious in his communication, and having been crushed by repeated failure, the kid bangs his head or hits someone or breaks something.

This is then the ONE behaviour that is noticed and analyzed. Then the child is taught how to communicate (he communicated perfectly in the first place, so really he is taught his own communication is wrong), and what he is allowed to communicate--not his real need (and this is almost always "need to know something", "need this small piece of information", or "need many, many pieces of information" when it is not "I am in pain and must deal with this") but the need everyone else has decided he was expressing when his behaviour became unacceptable. This happens to autistics who can talk, and talk very well, and are even called articulate, so speech (and speech is different from language or communication) is not the issue.

One of the hardest things that happens to some autistics is that after a great struggle to produce speech, we find it doesn't work either, it just continues to be exhausting. This is because our needs are different from non-autistic needs and our needs are called "wrong". And I mean what we need in order to learn, to achieve, to interact, to develop--our needs in all these areas are different.

I was asked in a documentary why I hurt myself. This was some years ago; I was just at the point where I was starting to realize I was not totally appalling because I was autistic. I was in an "environment" where no other conclusion was available.

Anyway, what I said when I was asked was that it (hurting myself) was my vocabulary. I have to add at this point that the fact that I hurt myself is obvious, even though I hurt myself in private. I have scars.

Then I said that I'd worked hard all my life to learn language. This was very, very difficult and took pretty much all my resources. But I learned, and I learned two languages. Then I found out this language thing didn't work; I was not good enough at it; I somehow did it wrong. My very accurate words weren't heard. I was and am frequently told I've said things I've never said, and haven't said things I have.

I hurt myself to re-establish some form of accuracy. I establish something I've absolutely done. This is a way of regaining accuracy. So while it may seem that I'm frustrated, that isn't the case. Confusion, yes to some degree. But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.

Thursday, November 30, 2006

Canada's Health Minister, Tony Clement, recently made some announcements about the future of autistics in Canada. One thing he announced was a new page about autism on the Health Canada website. The location of this page reflects the Conservative government's position that autism is a disease. In Canada, autistics are therefore seen as sick and as needing treatment in order to become healthy, meaning non-autistic.

The Health Canada page elaborates on this government's position, a position now being imposed as public policy:

Despite the frequency of ASD, there is much that is unknown about these disorders. More research is needed to better understand the incidence, causes, effective early screening tools, optimal treatments, and hopefully one day, prevention.

Canada's government has taken the position that autistics have nothing to contribute to society, have no role at all to play in Canada, have no worth or value as autistics, and ideally would not exist at all. This government hopes for a Canada free of autistic people, a Canada where all autistic traits and abilities have been stamped out.

I've phoned someone in Mr Clement's office and asked if they were sure this is what they wanted to promote as public policy. And were they aware of what the consequences would be to autistic peoople, of having our government tell Canadians that autistic people are unwanted and unwelcome in Canada, and that it would be so much better if we were extinguished.

In the recent autism "debates" in Canada's House of Commons, there have been many self-congratulatory comments about how productive it is to have all the major national political parties agreeing on an issue, and working together towards the same goal. It should be clear what this goal is.

The MP Ruby Dhalla articulates the Liberal Party of Canada position about autism:

I am sure this national strategy is going to ensure that we have the proper investment to do further research into whether there are other treatment options available and into how this type of condition can be prevented.

Here is the MP Peter Stoffer, articulating the official position of the New Democratic Party of Canada:

We need to find out what causes autism, what we can do to prevent it from happening, if that is possible.

That's Canada's three major national political parties, and all three agree that autistic people should not exist. Society, according to our government and the major national opposition parties, should consist entirely of non-autistic people. Autistics are sick, and this sickness has to be eradicated, for the good of society.

The MP who is most responsible for these autism "debates" taking place, the Liberal Andy Scott, opened the first "debate" in the House of Commons by referring to the many autism advocates he consulted with before deciding on the future of autistics in Canada:

They are Canadians concerned about something that is unfinished business for Canada.

That unfinished business is the unacceptable continued existence of autistic people in Canada. All our major political parties are determined to make autism into a very finished business. Right now, they want all autistics in medical treatment until we are no longer autistic, but they are also demanding that autism be prevented, so that no more autistic people are born. They don't want autistic people in Canada at all. They see our existence as being wrong, as being diseased, as being a burden on non-autistic people, as being bad for Canada, as being an insult against what Canada stands for. There is no one to disagree with them, as these non-autistic leaders work hard together on their important eugenic agenda.

Tuesday, November 28, 2006

Nancy Minshew, of the University of Pittsburg School of Medicine, is an influential autism researcher. I find her published work very interesting and informative, even though I would tend to dispute how she and her group sometimes interpret their findings. Likewise, I find her ideas worth a lot of attention, without necessarily agreeing with her.

This is from a 2005 editorial by Nancy Minshew in the Journal of Autism and Developmental Disorders, of which she is an associate editor:

A third issue raised by the studies in this issue is the degree to which theories once proposed have been held sacrosanct. The executive function and central coherence theories have held nearly sacred status for at least a decade and a half. This has in some cases meant that papers submitted with data or ideas that did not support these theories were frequently rejected or sternly directed to revisions that conformed. This is not a problem unique to these two theories. This has gone on for as long as there has been autism research. Autism is a field that seems to worship its theories and theories appear to assume a position of far greater value than the data or the search for an answer—the purpose that theories are supposed to serve. Theories are essentially hypotheses or theoretical constructs that formulate what we know into a scientifically reasonable question about what we know and we don’t know but propose to test with the next phase of research. Theories are by definition disposable or under reconstruction and the sooner the better. The goal of the theory is the same as a canoe--to get across or up the stream. Once we learn what we need to know from the trip, we take the canoe apart and use the materials to build the next transport. The near death grip on theories by this field has impeded progress. It has also isolated the field of autism to some extent from mainstream science. Some theories and conceptualizations held within autism are not mainstream science. Somehow autism evolves its own lingo or pragmatics that is idiosyncratic. When this happens, it can repel senior scientists from other fields of expertise highly relevant to autism who find these idiosyncrasies nonsensical and too much of an added burden to deal with. It also confines the field of autism to what it knows rather than stretching outside its traditional behavioral origins to fully embrace neuroscience. Autism needs these scientists and neuroscience. It is important that open mindedness be a goal so that insularity and circular logic is avoided. Autism will not benefit from evolving its own language of science that is different from the mainstream.

Monday, November 27, 2006

Harold Doherty is a leading Canadian autism advocate. He has a blog, on which he has just posted his expert opinion (Mr Doherty is a lawyer) about a legal case I lost a long time ago. I lost this case for two separate reasons, reasons which are clear if you read the full, original decision.

The first reason is that in Canada, the Labour Code only protects workers who are judged to be "normal", as opposed to all those who are able to perform any particular job. So those who are not deemed "normal" are considered to have a "medical condition", are not protected, and can be obliged to do pretty much anything by their employers, even if it is dangerous to them. E.g., while it is illegal to put a hearing person in danger by not providing proper ear protection in a noisy environment, it is not illegal to put a deaf person in danger by removing from their workplace the kinds of information they need in order to work safely. The deaf person is considered to have a "medical condition", even in a workplace where s/he has advantages over hearing persons, and not to be entitled to a safe workplace under this law. I used this specific example when I argued the appeal.

The second reason is that what I was being asked to do was not part of my job description, and therefore did not fall under the law. That is, if an employer asks you to do something dangerous, you cannot use this law to refuse, if this something is not part of your job description.

The original decision hinged on wording that was only available in one language, an anomaly which caused a lot of dictionary-searching. It was long ago (regardless of Mr Doherty presenting this as news), but I vividly remember the extent to which the original decision was based on semantics.

The first reason, as described above, is problematic. It means if you are not "normal" (by the definition of whoever decides these things), no matter how well you do your work, you can be gratuitously put in danger at any time by your employer, and you do not have the right to refuse to do what they demand. Your only recourse is a human rights case, which would involve losing your job and taking years and years to fight (at your own expense) for an uncertain outcome. However, Mr Doherty is not objecting to this interpretation of the law, but to the fact that I contested it.

In my case, I was gratuitously put in danger, and this continued for a long time with multiple variations on the theme. Mr Doherty's complete response to this is in the link above, including the derisive implication that I was arguing that autism is an occupational hazard. No, Mr Doherty, I was arguing that the consequences of disability-based harassment and discrimination, including the disregarding of relevant laws and contracts, are hazardous in many ways, including to one's safety.

This is my response to Mr Doherty, major league Canadian autism advocate, and his views of an autistic adult attempting to make workplaces safe for autistic people. I've also posted this response here. The CSST (a French acronym) is Quebec's workers health and safety board.

I had a better safety and work record than most Canada Post letter carriers, and maintained this for a long time. It was recognized, e.g., that I could work safely, accurately and quickly in hazardous conditions that my co-workers refused to work in.

This case involved an illegal (no legal or contractual basis, no credible reason of any kind was ever given) expertise which was scheduled in many contradictory ways, including without notice. Notice was required, both under the law and under the collective agreement.

Provincial but not federal jurisdiction workers are protected from this kind of harassment under a provincial law (ARIAOD, administered by the CSST). This kind of harassment, in my case, set precedents such that no one knew what to do or how to apply the law.

For example, apart from never agreeing with themselves over why an expertise was being demanded (only about half the time was I told it had something to do with the short, long-ago work accident), Canada Post management threatened me with disciplinary action if I refused to see a doctor who did not exist. This "doctor" was not listed as a doctor anywhere in Quebec, and it turned out that indeed, he did not exist.

Throughout the time of this case, and long after, I was at work and doing my job to the usual "exemplary" (Canada Post's word, in writing) standards. My attendance record was recognized as superb, with extremely infrequent absences for any reason.

The expertise was never related to autism, though multiple conflicting reasons for this expertise were given by Canada Post. Sometimes different reasons were given on the same day, as the threat continued for months. The duly certified injury on duty leave lasted 4 days and was my first declared work accident for 8 years. Canada Post failed to ask for an expertise within the time allowed for by the CSST's law (ARIAOD), but continued to demand an expertise for months after the time allowed, though for multiple different and contradictory reasons not founded in any contractual or legal right on their part.

I don't know about the autistics Mr Doherty works with, but it has been very dangerous for me and many other autistic adults to see health-care professionals who have no knowledge of autism--the kind of professional I was being forced to see. This was regardless that it was suggested (by doctors) that I see doctors who were knowledgeable in autism, something I would have been willing to do if a credible reason were provided for an expertise. Instead, the suggestion that I see doctors who had some familiarity with autism (doctors I had never seen before and didn't know of) was rejected by Canada Post.

The obstacle to employment for autistics here is not a failed attempt to protect us from being put into danger via gratuitous threats of an illegal medical expertise. The obstacle comes from a psychologist (a behaviour analyst) who recently informed Canada Post at the national level that there is nothing good about autistic people. This psychologist promoted a dire view of autistics as being less than human (e.g., we have no emotions) and good for nothing (e.g., if we have any abilities, we use them in totally useless ways), which Canada Post took and continues to take to heart. Yes, this psychologist was prosecuted for her grossly biased presentation and for conflict of interest (I was her client) by the Quebec Order of Psychologists, but it was already far too late. Having a long-standing excellent work record, including in the area of safety, does not protect you against this kind of professionally-promoted prejudice.

All of the above has been testified to, complete with hundreds of pages of evidence (some of it publicly available), at the Canadian Human Rights Tribunal, in the first autism-related case referred for a hearing there. This case is the result of my revealing my diagnosis to Canada Post after 11 years of service, and succeeds a previous Canadian Human Rights Commission case that was settled in my favour.

It's unclear what Mr Doherty would have wanted me to do. He does seem to be implying--I'm sure he'll correct me if I'm wrong--that an autistic who knows a medical expertise is likely to be dangerous should not be believed, even when (as in my case) she has medical documentation to back her up. And nor, apparently, should any consideration be given to engaging a medical professional who has some knowledge of autism. This is typical of how my attempts to stay autonomous--and not require a high level of services, and to basically survive--have been dealt with by Canada's important autism advocates.

Sunday, November 26, 2006

Based on the arguments and testimony of autism advocates (parents, professionals, government officials, etc.), the jurisprudence for autistics in Canada is premised on the assumption that autistics are inherently doomed, and that we destroy ourselves, our families, our communities, and of course the economy. Our essential differences are judged to be bizarre, unwanted, dreaded, repugnant, and harmful to ourselves and others. We are judged to have nothing at all to contribute to society, instead being a vast drain on personal and public resources. Our jurisprudence says we just naturally belong in institutions, allowing our autism advocates to elaborate that terrible things must be done to us in these institutions, this being just how autistics should be treated. Because of how horrible and less-than-human we are. The jurisprudence says so.

Legal decisions--the lower court Auton decisions and the Wynberg trial decision--that grossly dehumanize autistics have been overturned. This has resulted in extreme protests from autism advocates, who cannot tolerate even the possibility that autistics might be human, might have personhood, might merit basic human rights as autistic people. Autism advocates insist that autistics have humanity and are persons and have basic human rights only if and when we are intensively trained via ABA to be less autistic or not autistic at all. Once we can suffiently pass for normal, then and only then may we be considered to be human and treated as such.

The overturned decisions remain, regardless, in our jurisprudence, being quoted in the House of Commons and the Senate and in other legal decisions, and otherwise governing the lives of autistics in Canada.

In contrast, here is some jurisprudence for non-autistic Canadians (I've taken out the citations):

It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodiednorms [...] One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled.

Our powerful and influential autism advocates have ensured that it is now inconceivable that autistics would fall under this kind of jurisprudence. Instead, they have demanded and ensured that emulation of the norm is our only avenue to obtain even the most basic human rights. That would include the right not to be abused in institutions, this institutionalization and this abuse being not only condoned but promoted by our autism advocates and our national media as what we deserve--unless we undergo unlimited medically necessary ABA and become sufficiently normal.

The legal decision above continues:

Deaf persons have not escaped this general predicament. Although many of them resist the notion that deafness is an impairment and identify themselves as members of a distinct community with its own language and culture, this does not justify their compelled exclusion from the opportunities and services designed for and otherwise available to the hearing population. For many hearing persons, the dominant perception of deafness is one of silence. This perception has perpetuated ignorance of the needs of deaf persons and has resulted in a society that is for the most part organized as though everyone can hear [...]

This legal decision was handed down by the Supreme Court of Canada almost 10 years ago (Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624). This year, in another legal battle (argued by a Deaf lawyer), sign language has become a de facto official language in Canada. The judge in this case wrote: "It is fundamental to an inclusive society that those with disabilities be accommodated when interacting with the institutions of government."

Nearly 10 years after Auton started its way through the courts, autistics are as far from achieving inclusion or accommodation as is possible. We are considered not only to be abnormal and flawed, but sick, diseased, less than human, and doomed. This is consequent to the work of autism advocates. We are subject not only to pity and charity, but to constant messages that we are unwanted and ghastly burdens, and dreaded and feared inhuman collections of senseless, useless, repulsive and dangerous behaviours. And we are frequently treated as such. This too is the work of autism advocates. We daily live the consequences of "invidious stereotypes" and multiple other forms of denigration, all aggressively promoted by those who claim to represent us and who demand that our dehumanization and denigration be enshrined in our law once and for all.

Tuesday, November 21, 2006

You've never heard everything, when it comes to autism advocacy. They'll always find a way to denigrate autistics even more, to make us more dreadful and scary and repugnant. They'll always find a way to put us in even more danger, should we make the appalling error of venturing out into society without our ABA therapists. Autism advocates specialize in dehumanizing autistics, and they're not done by a long shot.

It's hard for the rest of us to imagine what it's like to have a child with autism. Imagine a kid who has the Terrible Twos -- forever. A kid who screams for hours, bangs his head and doesn't sleep at night for weeks on end. A child who doesn't speak, is often inconsolable, who bites and hits other kids, and whose diaper you may still be changing when he's 10.

Then Ms Wente introduces one of the sources of this information, who is a leading Canadian autism advocate (and FEAT director):

"My son is in a mainstream class. He goes to other kids' birthday parties," says Jean Lewis. She is the mother of an autistic 12-year-old and also a director of a B.C. parents' lobby group. Where would her son be without treatment? "He wouldn't be living at home," she says. "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."

Now the "choice" for autistics is either to undergo unlimited "medically necessary" ABA (no other kind will do), or to be institutionalized, to live in restraints and to have our teeth pulled. Maybe institutions have gotten to be old hat. Maybe the powers that be have become inured their daily bombardment of messages that autistics just naturally belong in institutions. So Ms Lewis, being an eminent autism advocate, had to make things a little more compelling.

In Ms Wente's column, Ms Lewis is describing the same autistic boy who Michael Lewis, her husband, promised to institutionalize "immediately" or "shortly thereafter" if ever his ABA program stops for any reason.

I'm pretty sure it's hard for Ms Wente and Ms Lewis to imagine what it's like, to wonder if you'll lose your freedom, again, because so many important people keep dehumanizing you and insisting you don't belong in families or society, but in institutions and in restraints. And then to wonder if, next time, they'll also pull your teeth. Because Ms Lewis says that's what we need. And Ms Wente reports this uncritically.

The end of Ms Wente's column reveals a further source of Ms Wente's information. That would be the Autism Speaks video, "Autism Every Day", which Ms Wente describes as "a glimpse of a day in the life of autism parents". She fails to see "Autism Every Day" as a glimpse at what autistic children have to endure, every day, when they are seen as appalling burdens, when they're talked around and shunted around as though they're non-sentient props. Ms Wente demonstrates that when you dehumanize autistics enough, as Ms Lewis so proficiently does, right down to pulling our teeth if we don't behave, then we disappear altogether, so that the only humans Ms Wente can perceive in "Autism Every Day" are the parents.

Monday, November 20, 2006

Reinforcement was given in the form of small bites of the child's food, such as pieces of Sugar Flakes, a breakfast cereal. As learning progressed, evidenced by the fact that the child might occasionally emit an approximation to the current response without prompts, food reinforcement was withheld for prompted behavior and only delivered contingent upon unprompted behavior. This step is a rather important one in the training, since continual reinforcement for prompted behavior probably would prevent a shift into imitative responding.

The use of food as reinforcement apparently "forces" the child to behave correctly. We have observed that some children would not acquire new responses unless it was impossible for them to survive without the new learning, i.e., unless their sustenance was contingent upon the new learning. Stated differently, social rewards, such as attention and approval, which effectively control the behavior of most individuals were inadequate during these early stages of learning. The child not only did not learn, but became very uncooperative and tantrumous.

Reference:

Lovaas, O.I., Freitas, L., Nelson, K., & Whalen, C. (1967). The establishment of imitation and its use for the development of complex behavior in schizophrenic children. Behaviour Research and Therapy, 5, 171-181.

Sunday, November 19, 2006

When some kinds of human beings are devalued, the people doing the devaluing often work to enshrine this devaluation in written and unwritten laws, rules, and regulations. The purpose of the rules is to make sure those lesser humans don't get in the way of the real ones. A lot of creative, meaning destructive, ways have been found to keep humans deemed to be substandard in our substandard place.

A Canadian Senate committee (the Standing Committee on Social Affairs, Science and Technology) is holding hearings about autism treatment funding, and about a national autism strategy, at the demand of Senator Jim Munson. Senator Munson equates autism with cancer and promotes the view that unless autistics get early ABA/IBI, almost all of us just naturally belong in institutions. This view is unsupported by the existing science and instead reflects Senator Munson's view of autistics as sick, substandard human beings who, unless we become much less autistic or not autistic at all, do not belong in society. Senator Munson is also one of the Senators in the Committee holding hearings to decide the future of autistics in Canada.

This committee has just decided to ban autistics from participating in the major meeting of their series of autism hearings. This is a round table meeting scheduled for December 8, 2006. The purpose of the round table is to discuss autism research in Canada. Non-autistic autism researchers and two parent organizations (which are also appearing as witnesses elsewhere in the hearings) are invited. These parent organizations are the FEAT-like Autism Society Canada and the DAN!-like Autism Canada Foundation.

Autistics have been banned before. One of the ways our leaders, our autism community leaders and our political leaders, let us know that autistics are substandard, and therefore put us in our place, is by making a rule that autistics aren't allowed to participate when autism research is being discussed. Research is a non-autistics only water fountain. Autistics have a separate, unequal water fountain down the hall, a place where research is never discussed, where decisions about research are never made. We're not allowed to go near that non-autistics only fountain. It's against the rules.

The Canadian Institutes of Health Research of course agrees to ban autistics--look at their name, Canadian Institutes of Health Research, which is an automatic instruction for autistics to give up our seats. Or rather, stay away from that fountain. One of the groups listed as a witness at the Senate autism hearings is the Canadian Autism Intervention Research Network. They've banned autistics from their fancy conferences too. It's not hard--they're invitation only conferences, so they just don't invite autistics. And they have no autistics anywhere in their governance. After all, they too have Research in their name, and everyone knows that's a non-autistics only water fountain. You have to figure it was a priori guaranteed that the Canadian Autism Research Workshop, which combined Autism Society Canada--a paragon of putting autistics in our place, the CIHR, Autism Speaks (who exclude autistics automatically, as a sort of reflex), as well as some people from CAIRN, and a whole lot of government people, like the Office for Disability Issues and Health Canada, would bar autistics, except as lunch time entertainment for the important non-autistic decision-makers.

Similarly, the Senate Committee people told me that if I appear in their hearings, I can't be put with a particular group of witnesses, because these witnesses are researchers. This Committee just can't have autistics near that non-autistics only fountain. We just get in the way and mess things up, being the substandard types we are (the sick, if not cancerous, ABA/IBI-deprived autistics Senator Munson says belong in institutions). Parents, on the other hand, are autism research experts and essential contributing stakeholders by definition, so long as they're non-autistic. If you're an autistic parent, sorry, your fountain is down the hall and nowhere near anything related to research. That's the rules.

I've had it explained to me, many times, v-e-r-y s-l-o-w-l-y, that this is research, as if I only had to be told this important fact to realize how totally absurd it is to even imagine that autistics would have anything to contribute or anything at stake. The decision-makers I've spoken with have been utterly baffled when I didn't fold up and skitter away in abject shame when they said that magic word, research, the one supposed to make all autistics disappear instantly.

This Senate Committee claims they'll have a few autistic witnesses in their hearings, all at a safe distance from that non-autistics only fountain, though none has yet appeared and none is yet in the published schedule. Indeed, on one day next week, they have a full slate of six autism organizations (including one which isn't an autism organization but pretends to be), none of which is represented by an autistic person.

In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.

Full and equal? Excuse me Senators, but you've banned us, on the grounds that we don't belong at the table when major and crucial decisions about us--decisions about autism research--are being hammered out.

I've raised a ruckus about this. I don't see a lot of issues a whole lot more important than the "full and equal" participation of autistics in discussions and decisions about research priority, policy, and design. Right now, very nearly one hundred per cent of these discussions and decisions are happening with zero per cent autistic input. And now our political leaders in the Canadian Senate have banned us again. Shame on them, for perpetuating grossly prejudicial stereotypes about autistics and autism research. Shame on them, for seeing us as unwanted impediments to the important non-autistic people they welcome to sit at the round table and decide our future. Shame on them, for refusing to see us as essential contributors, both to society and to any discussion about autism research. Shame on them, for refusing to see us as human beings who live and suffer the consequences of decisions made about us in our absence. Etc. Shame, shame, shame.

Saturday, November 18, 2006

The Globe and Mail today started a series about cancer in Canada. I'm working my way through a long article, in multiple parts, called Cancer: A day in the life . The article works through one day, in increments of time, describing the lives of 60 people with cancer at that time. I'm still in the morning of this day. I'm maybe a quarter of the way through. All these people are dying, except two who seem to be doing well. There is an audio slide show about a young child with cancer, who did not survive, but will never be forgotten.

The introduction states that cancer kills 193 Canadians a day, or about 70,000 a year. Canada doesn't have a national cancer strategy, as is noted in an accompanying editorial. The words "scourge", "torment", "affliction" and "horrific" are used in this editorial. We are so used to those words being used to describe the existence of healthy autistic people.

Autism is routinely equated with cancer. Or we're told it's worse than cancer, because it doesn't kill us--if only autism were fatal, we would all be better off. The autism advocate Andrew Kavchak states that his autistic son would be better off if he had cancer. The famous behaviour analyst, Gina Green, equates autism with acute lymphocytic leukemia (ALL), and ABA-based autism interventions with treatment for this kind of malignant cancer. The only difference between autism and leukemia that Dr Green can spot is that there's "probably more known scientifically about ALL than autism" and "there are reliable, objective tests for diagnosing ALL".

Nowhere does Dr Green mention that without treatment, ALL kills people in about 3 months.

I don't think ABA advocates like Dr Green, and Mr Kavchak, and so many others who glibly use cancer analogies, really see any difference between a cancer that kills people and autistic traits and abilities. They see autistic traits and abilities as needing eradication just as much as malignant cancerous cells and tumours.

Canada is much more likely to get a national autism strategy--with the goal not of helping autistic people, but of attacking autistic traits and abilities as though they were malignant--than a national cancer strategy. Parents with autistic children who, according to their parents, are as sick as or even sicker than children dying of cancer command a lot of respect, as they speak of devastation and tragedy, of how their children are doomed, of losing a child to autism, as if an autistic child is a dead child. No one has questioned them, or their goal of having autism treated as if it were a dreaded fatal disease.

In reality, this famous study is evidence that an early intensive behaviour intervention wasn't effective at all, for even a minority of autistics--not without the unacceptable systematic use of physical punishment. Lovaas and colleagues instead provide guidance in how to spot ineffective (meaning, e.g., grossly inadequate, and possibly harmful) interventions or programs. These would be interventions or programs accompanied by claims or evidence that unless autistics are deliberately and systematically hurt, we will fail to learn and/or are doomed. Would our influential autism advocates call a preschool program for non-autistics "effective" if the kids only made meaningful progress when they were hit? And if our eminent autism advocates wouldn't, why are they insisting that autistics deserve such lousy standards?

... until autism advocates stop using the Auton trial decision, the New York State Dept. of Health report, and the US Surgeon General's report as "proof" that ABA-based interventions are "effective".

All these popular lobbying tools are heavily dependent on Lovaas (1987) and McEachin et al. (1993). Using them sends the same message as the invariable flourishing of the famous 47%: that it's acceptable to use aversives on autistic children when ABA-based interventions do not otherwise work. This is the current-day rationale for existing aversive interventions, including those provided at the JRC.

... until autism advocates stop claiming that ABA-based interventions are "effective" for all autistics, and that all autistics are doomed without ABA.

This follows from the previous point. According to the published data, and by their own standards, ABA programs fail more often than not; in the current climate, autistics who do poorly in ABA programs are likely to stay in them indefinitely. But there are also some parents and professionals who claim that when non-aversive ABA fails, the necessary next step is the use of aversives. There's Matson (2006), who raises concerns that non-aversive ABA programs are excluding autistic children who really need aversives. Kit Weintraub's letters and the vehement support for the JRC, the routine use of risperidone or other anti-psychotics as part of some ABA programs, etc., are examples of how uncritical cheerleading of ABA programs can be seriously hazardous for autistics who do poorly in ABA.

This campaign (here's a popular example; links to another popular example, Canada's autism community flagship website, can be found within my response to it) being, with occasional digressions, the subject of this blog ... So long as autistics are feared, dreaded, unwanted, dehumanized, reduced to drains on society, written off, and have our voices denied, there will always be those who can, with impunity, claim that we really need to be hurt, or we are doomed. So long as it is so vigorously argued that there is nothing worse than being autistic, then it will remain acceptable to treat us in ways that would never be acceptable for other human beings.

Tuesday, November 14, 2006

Kit Weintraub is an important and respected autism advocate. Her work has gained the approval of the Association for Science in Autism Treatment (ASAT), and of the leaders of Canada's autism community. I've been alerted to some letters she made public earlier this year. These letters appear on the "JRC Parents/Friends" blog. This is a blog run by the Judge Rotenberg Center and featuring testimonials supporting the work of the JRC. For information about how the JRC treats its "students", many of whom are autistic, see this report. Ms Weintraub's letters mostly speak for themselves.

Comments: Dear Judge Rotenberg Center, Just wanted to say that I saw Dr. Israel on CNN with Anderson Copper and Bennett Leventhal. I was so impressed by Dr. Israel. I have two kids with autism, one, a girl, twelve, who is extremely self-injurious. We have run a very high quality ABA program for her for years, but could never get rid of the self-injurious behaviors. Only on risperdal are they reduced, and we have seen her gain close to 100 lbs on the medication. We have had all sorts of behavioral experts come in and try to extinguish the behavior with positive behavioral interventions, unfortunately, they did not work. No one wants to try electric shock with their child, it is a last resort, but I would do it in a heartbeat if I could get my precious child to stop hurting herself. Is the risperdal less abusive? Weight gain, tardive dyskinesia, disabetes, Dr. Leventhal has no answers. I am sorry you had to be subjected to his condemnation, but you carried yourself with grace and dignity. Thank you. Kit Weintraub, mother to Emily Weintraub PS I had to check admission in order to send this, unfortunately, in Wisconsin, there is no way our district would pay for the school. I am checking admission in order to send the email, this is really just a comment. PS, I sent a similar comment to Anderson Cooper.

Thanks, Dr. Israel. You are welcome to use my comments on your blog. I have been a very outspoken advocate for behavioral treatments that raise the quality of life for our children. It is not easy to stand up for the truth, and the truth is, for some kids, aversives are all that keep them from killing themselves or others. No one should be judged or condemned for earnestly trying to extinguish dangerous behaviors in children who cannot be taught by any other means. It never fails to amaze me that people don't get the difference between beating a child and using an aversive under controlled circumstances in the presence of extreme behavior that has not responded to anything. Leventhal was lying. There are kids for whom nothing besides aversive behavioral interventions works short of drugging them into a stupor. Good God, what parent wants to be in the position, or what clinician, for that matter, of choosing electric shock or watching their child put their eye out? Bottom line is, I guess most people would rather see the kid put their eye out, and just wring their hands and shrug their shoulders. I guess I am preaching to the choir. I have been lambasted, too, for supporting aversives in extreme last-resort circumstances too, so I guess I can somewhat relate to what you and your staff must be going through. It is hard. No one likes being called a child abuser.

As I wrote earlier, the JRC isn't widely admired by behaviour analysts, and I've assumed it isn't admired by autism advocates in Canada and elsewhere. I would never dispute Ms Weintraub's claim that she is a "very outspoken advocate", and she clearly has many important supporters, among whom ASAT and Canada's leading autism advocates are prominent. For this reason, among many others, it's important to know what exactly Ms Weintraub is advocating for, and what some of the consequences of this kind of advocacy are, for autistic children and adults.

Sunday, November 12, 2006

In parts one and two I looked at some of the claims made in Sabrina Freeman's book, "Science for Sale in the Autism Wars", in the section called "The Classic Aversives Ruse".

Another of her claims is that behaviour analysts didn't stop systematically using physical aversives in early ABA programs because this practice became unacceptable. Instead, behaviour analysts found that aversives weren't genuinely effective, and altered their practices accordingly. To support this view, Dr Freeman provides evidence from a 1996 Canadian TV documentary in which Ivar Lovaas appeared and explained the methodological reasons why he abandoned aversives. She also provides a quote from Smith and Lovaas (1997), and also lists three "replication studies" in which aversives weren't used, but which had "significant and impressive" results.

Is Dr Freeman right?

Re Dr Lovaas' turn on TV, using a TV program as a credible source for scientific information seems like a bad idea. But it's consistent with the standards that our finest autism advocates have decided are good for autistics. Autism advocates in Canada have also used education numbers as epidemiology. They've promoted the use of legal decisions, opinion polls, "fact" sheets, political speeches and media reports as credible sources of information about autism and autism treatment, often without bothering with primary sources in peer-reviewed science (see an example here).

Setting aside Dr Lovaas' TV appearance, Smith and Lovaas (1997) is a published rejoinder to criticisms of the UCLA Young Autism Project. It doesn't contain data reporting the success of a non-aversive early ABA program. Instead, in responding to concerns that Lovaas (1987) depended on the use of physical aversives, Smith and Lovaas state that since the time that study began (in the early 1970s), advances in research have "rendered such procedures unnecessary". However, this paper provides no evidence, and no references, indicating what these advances might may be, when they were introduced, when they replaced aversives at UCLA, etc.

As for the three "replication studies" cited by Dr Freeman, one is an uncontrolled trial (Anderson et al., 1987), one is a retrospective study (not a true experimental design) which has been roundly condemned by Dr Lovaas (Sheinkopf & Seigel, 1998; Lovas, 2002), and one is a non-randomized controlled trial which now has a presented follow-up showing that the few autistic children who did well did not maintain this ten years later (Birnbrauer & Leach, 1993, 2006). Not one of these three studies reports even one child who achieved normal functioning in the short term, by the criteria in Lovaas (1987).

So what other evidence is there, besides Dr Freeman's, about why and when aversives stopped being used at UCLA in ABA programs for autistic kids? Is there any evidence for when those advances in research, the ones making aversives obsolete, actually occurred?

Lovaas (2002) writes:

Contingent aversives were employed in the Lovaas (1987) study. Many states now prohibit the use of aversives, and many parents object to such treatment. Either of these factors could prevent replication of the Lovaas (1987) study. However, although the UCLA Young Autism Project no longer uses aversives, we have taken advantage of alternatives to aversives developed during and after the time of the 1987 study was completed (treatment in the Lovaas, 1987, study took place between 1970 and 1984).

Again, there are no references pointing to primary sources reporting data from non-aversive early ABA programs. However, Dr Lovaas doesn't appear to be claiming, as Dr Freeman does, that the unacceptability of aversives (including their illegality) played no role at all in altering the practices of behaviour analysts.

Then there's Smith, Groen and Wynn (2000, 2001). This is the only existing randomized controlled trial of an early ABA program. This study took place at UCLA, involved researchers trained and overseen by Dr Lovaas, and involved, in sequence, all children who were referred to the UCLA YAP between 1989 and 1992. The authors report how their treatment differed from the treatment in Lovaas (1987):

Finally, though contingent aversives were employed briefly with the first 4 children, they were then stopped for all children, whereas Lovaas (1987) employed this intervention more extensively.

So we now know when aversives stopped being used at UCLA: sometime between the 4th and 5th referred child in Smith et al. (2000). It seems unlikely that the original plan was to use aversives with some children and not others; there is, in any case, no mention of this by the authors, who report other abandoned plans. Instead, it seems more plausible that the authors had started by using aversives with the intention of having this as part of the treatment for all the experimental group children. Something then happened between child 4 and child 5 such that child 5 (and all the children after) didn't receive aversives at all, and aversives were removed from the treatment of the first 4 children.

This seems to narrow down the time when, apparently, there were these reported advances in research, and it was decided that they should supplant the use of the now unnecessary and ineffective aversives. Or possibly something else happened. In 1991, a law was passed in California, making the use of physical punishment in behaviour programs illegal. This law was first introduced in 1990. In 1989, it may have already been known that such a law was going to be proposed.

So we know that aversives were considered "effective" at UCLA at least into 1989. If they were not, it would have been grossly unethical to use them on the first 4 children in Smith et al. (2000). It's possible that sometime between child 4 and child 5 in Smith et al. (2000), there was suddenly an advance in research allowing for the abandonment of the suddenly non-effective and unnecessary aversives (for which these researchers must have received the requisite institutional review board permission). Or it's possible that this was about the time it became known that this procedure--physical punishment--was likely to become illegal in California.

Dr Freeman's book was published in 2003, but she doesn't mention Smith et al. (2000), the only direct evidence of exactly when aversives were abandoned by the UCLA YAP. As to why, there is no way precisely to know, unless Drs Lovaas or Smith decide to disclose this information. However, the evidence doesn't entirely support Dr Freeman's account. There's still the problem of Dr Lovaas taking the trouble to prove how effective contingent aversives were in his famous 1987 paper. And the available evidence does strain the credibility of the assertion that it was advances in research which solely were responsible for the UCLA YAP's apparently sudden about-face re aversives.

Saturday, November 11, 2006

Here are some quotes from two recent media stories, from two sets of parents, about their children:

First set: "I try not to dwell on it ... I try not to look at my kids like they're sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children."

Second set: "I started crying and I was just sobbing because I thought there wasn't anything I could do about it... The child you thought you were going to have really dies when you find that out. You've got to become acclimated and accepting of the fact that that person is gone... it was the most devastating thing you could imagine... The public needs to get it that this is a common, expensive and devastating disease that needs the full attention of society."

Well, it's not hard to spot the second set of parents as having an autistic child. The media story is about these parents' "anguish". Here's how their devastating autistic child is described:

Jon likes activities such as rollerblading, swimming and, most recently, riding his new bike. Jon, who has three older sisters, also loves to read. "He seems to read better than he talks... It comes easy to him, so we're trying to run with it."

Five-year-old Jamie and two-and-a-half-year-old Carson have Batten disease, a fatal, inherited nervous system disorder that causes the brain to shrink and shut down over time, eventually robbing its young victims of their speech, sight and motor abilities. There is no known cure or prevention for it... Jamie can't speak, see or move much on her own anymore. She has to be fed through a tube and carried wherever she needs to go. Although still sighted and mobile, Carson has lost the few words he had picked up, including "mom."

This story finishes with a short, accurate (so far as I can tell) section of information about Batten's, including that children don't live longer than 8-12 years, 20 at the outside.

In Canada there are autism advocates, including political leaders, who claim there is no worse nightmare for any parent, nothing more devastating, no worse anguish, than to have an autistic child. They also claim that autism is the most severe of all neurological disorders, that is, it is worse than fatal childhood neurological disorders like Batten's. This distortion of reality accurately reflects how they see autistic lives.

Jaime and Carson's parents have been through a lot. Their first child died at one month. Their two other children have a fatal condition. The only treatment offered that might prevent them from dying is very experimental, unproven, expensive, and dangerous. Here is the only statement alluding to the care required for these children, neither of whom speaks, one of whom has no self-care abilities at all:

Keeping's Aunt Suzy and two home care workers help out with Jamie's and Carson's care.

I don't know where the calm, dignity and grace shown by Jamie and Carson's parents comes from, but they provide a perspective that's completely missing from the hysteria surrounding the supposed autism crisis.

Thursday, November 09, 2006

In her book "Science for Sale in the Autism Wars" (p68), Sabrina Freeman states that only four of the 19 experimental group autistic children in Lovaas (1987) received a treatment including physical aversives, thus minimizing their role in this landmark study. As often happens with statements from Canada's leading autism advocates, it's impossible to say whether Dr Freeman is unfamiliar with the scientific literature, or is familiar with it and is misrepresenting it.

Lovaas (1987) identifies "a slap on the thigh" (along with "a loud 'no'") as part of the treatment for the 19 autistic children in the experimental group, but not for the 19 autistic children in Control Group 1, in his main experiment. By his "main experiment", I mean the non-randomized controlled trial with the celebrated 47% rate of "normal functioning" as its experimental group's outcome. This use of aversives is reiterated in Lovaas and Smith's (1988) more detailed description of the study reported in Lovaas (1987).

However, as I've previously written, Dr Lovaas also took measures to demonstrate that this "aversive procedure", as Dr Freeman puts it in her book, was an effective and indeed essential component in the treatment received by the 19 experimental group children. This involved what Dr Lovaas called a "within-subjects replication design", in which the use of physical aversives was manipulated in four children from the experimental group and four from Control Group 1. This study-within-a-study is reported to be a success:

During baseline, when the contingent-aversive component was absent, small and unstable reductions were observed in the large amount of inappropriate behaviors, and similar small and unstable increases were observed in appropriate baheviors such as play and language. These changes were insufficient to allow for the subjects' successful mainstreaming. Introduction of contingent aversives resulted in a sudden and stable reduction in the inappropriate behaviors and a sudden and stable increase in appropriate behaviors. (p7)

Dr Lovaas concludes, about contingent aversives, that

...at least one component in the treatment program functioned to produce change, which helps to reduce the effect of placebo variables. (p7)

And,

...the within-subjects study showed that at least one treatment component contributed to the favorable outcome in the intensive treatment (experimental) group. (p8)

And further:

In the within-subjects studies that were reported, contingent aversives were isolated as one significant variable. Therefore, it is unlikely that treatment effects could be repeated without this component. (p8)

Two other papers from Dr Lovaas' group from around the same time (Epstein et al., 1985, which reports on 6 of the 19 experimental group children; and Lovaas et al., 1987, which describes part of the study-within-the-study) also refer to the importance of contingent aversives in the study design and findings which were later reported in Lovaas (1987).

The literature leaves no doubt that all 19 autistic children in the experimental group in Lovaas (1987) were subject to contingent aversives. There's also ample evidence that this "treatment component" was, in a separate experiment involving 4 experimental and 4 control group children, found then argued to be essential in achieving the famous result in the main experiment in Lovaas (1987). Dr Freeman's misreporting of the literature serves her purpose, in dismissing as "spurious" any concerns about aversives. But it also exemplifies the disrespect our most important autism advocates have for peer-reviewed science.

In fact, there's a later ABA intervention study from UCLA in which only four autistic children in an experimental group were subject to contingent aversives, but Dr Freeman does not mention this study or reference it in her book. That's going to be part three.